When the first blood test for prostate cancer became available in the 1990s, men were thrown into confusion.

Grassroots force

The PSA test, which measures for a protein called prostate specific antigen, is not always accurate. While it led to high survival rates, at the time it also led to a frenzy of testing that culminated in over-diagnosis and over-treatment.

While some men retreated hurt, some began gathering in support groups to try to make sense of what was happening.

The study highlighted the “loss of identity” and “loss of control” experienced by survivors. istock

These groups are now a grass roots force with around 15,000 members on their books.

There are 150 groups spread through cities and regional areas, with some designated for young men, for those with advanced cancer and for gay and bisexual men.

They are endorsed by the Prostate Cancer Foundation of Australia, which supports them and wants their active participation.

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“When you talk to the blokes in these groups, it’s sobering,” says Professor Jeff Dunn, chief executive of the Prostate Cancer Foundation of Australia and chairman of Behavioural and Social Sciences at the University of Southern Queensland.

“Now they are banding together to do something about this issue and we are working with them.

“Our aim is to develop a framework for survivorship so we can start to advocate for that change.”

In cancer, the convention is that once people have had a diagnosis, regardless of what happens next, they remain survivors until their death.

These survivors now want a role in creating Australia’s first set of survivorship guidelines for prostate cancer and the PCFA is providing them with the opportunity.

Such guidelines are usually devised by medical, allied health and research experts, sometimes with a patient on the panel.

The PCFA wants at least a third of the panel to be survivors because they’ve been through the maze and know where the problems lie.

'Lost within the system'

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To lay the ground for guidelines the PCFA co-funded two studies. The first involved prostate cancer nurses who provide long‐term survivorship care for men and their partners.

The nurses’ consensus view, published in the Journal of Clinical Nursing, was that the prostate cancer survivorship experience of men was under‐resourced, disjointed and distressing.

The second study, called 50 voices, interviewed 50 support group leaders. It is both a cri de cœur and a call to action.

The participants painted a dark picture of sustained physical, psychological and social burdens throughout the illness experience.

Men had to manage multiple side-effects including incontinence, sexual dysfunction and bowel problems. Some also had to cope with muscle-wastage, hot flushes, fatigue, weight gain and shrinkage of genitalia.

Many also struggled with depression, distress, cognitive impairment, fear of recurrence, social withdrawal and partner distress.

In addition, there was often financial distress from reducing work hours and expenditure related to their care.

This USQ study highlighted the “loss of identity” and “loss of control” experienced by survivors.

A lack of information about how to manage their problems, and a lack of access to services, often left them “lost within the system”.

But the study, published in journal Psycho-Oncology, also recorded a determination to gain consistency of care and for survivors to regain a sense of dignity and agency.

Australia’s prostate cancer support group movement is proportionally the largest in the world and is beginning to flex its muscle.

Jill Margo is the health editor. She writes about medicine and health from the Sydney office. Jill has won multiple prizes, including two Walkley Awards and is an adjunct associate professor of the University of NSW, Sydney. Connect with Jill on Twitter. Email Jill at jmargo@afr.com

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